1 million dollar workup and still no answer, 8 months of suffering

Posted by aeverett530 @aeverett530, Aug 6 9:05am

Went from active college kid to bed ridden going on 8 months

I’ve had a million in medical care and we still don’t know exactly what is wrong, but one thing is clear something is affecting my nervous system. Here’s a story and I would love to hear any input.

It all started the first week of December, the horror began. I started developing this pain on the outside of my throat and just not feeling myself/ I noticed a lot of muscle twitching. It was finals week so I had to push through this pain to finish up school. I ended up making the deans list so I was pretty happy about that. Meanwhile my pain got worse and I ended up at Bronson ER in Michigan. Doctor said it was probably just my thyroid disease flaring up . So no big deal go on my way and take some Motrin. But it’s started getting worse , and I didn’t know if I’d be able to drive home for Christmas break. I ended up pushing through and making it home. When I got home I went a day or 2 just thinking my pain would go away maybe it was a simple infection. But everything started getting worse. I developed a throat crunching/ tearing sensation when I swallow and some swollen lymph nodes under my jaw. I noticed I was losing weight really fast and that my appetite was gone. And it was on Christmas Day that my pain got so bad we ended up going to the Cleveland clinic. Yea I know what a way to spend Christmas. We spend a week at the Cleveland clinic with no answers but them thinking I’m crazy and I have anxiety. I started having shooting pain in my body that would shoot me out of the hospital bed. I couldn’t sleep for weeks and was in so much pain. After a week of being there they gave up and sent me home, while my nurses cried saying I’m so bad I shouldn’t be able to go home. After leaving Cleveland we knew this journey wasn’t over. I had to be pulled out of school for my second semester, talk about a sad day when my dad had to go get all my stuff out of the dorm. I ended up at a bunch of local ERs, Next I ended up at UPMC and got admitted there. There I started feeling worse, a lot worse. My heart starting going into supraventricular tachycardia episodes going into 170-180bpm and I had the code team rush in my room several times. Talk about scary when they had to put Paddles on me. I had to take medicine to flip my heart back into a normal rhythm. After feeling worse and worse and no answers they came up with the same explanation. Anxiety. I started losing hope because I know I don’t have anxiety and that something is really wrong with me. We went 2 months thinking maybe it’s lymes diseases. After getting released from there I ended up at alliance hospital and they just admitted me for observation. After getting released from there, I ended up at Aultman hospital and got treated with ivig. Which didn’t work and gave me a bad reaction. I’ve been thrown diagnoses like auto immune diseases, POTS ect. But no clear answers that make sense and no cure for my suffering. Mind you I’m still suffering and not any better the doctors come in and say well there’s nothing more we can do for you. So I got released from there. 2 days later I ended up at Akron children’s where they didn’t run any test and just pulled the anxiety card again. While I was there my heart rate reached over 210 and I was spasming out and sweating like crazy. Also I was losing tons of weight, I weighed in at 205 at the hospital and I was 240 while I was healthy. They literally released me the same day saying I was fine. I come home and end up at Salem ER where I don’t remember much but being in the ER. Once again they don’t know what’s wrong so I get sent to Cleveland clinic. I was breaking out in rashes and my heart was flipping between 100-130 back and forth. Obviously there was something wrong. There’s no way you go from a perfect healthy 19 year old, to this without something being really wrong. My appetite is gone, I hardly have bowel movements, my heart constantly goes tacky and raced a lot, all my muscles twitch and spasm, I have this crunching in my throat when I swallow, swollen nodes under my jaw, serious chest pain, and I’m in severe body pain all over, also feel like these internal body vibrations. Mind you when this first started I lost 30 pounds in 2 and half weeks. It’s been going on 7 months and I still don’t have a clear answer. I haven’t been able to drive or do anything for 7 months now! Mind you at first my heart was not involved and now it is which is a scary thing. It’s so sad doctors pull the anxiety card when they don’t know what it is at first and that’s effected my health greatly especially how much my heart is involved now. And lastly my parents and I started to notice my hair is falling out

Update So I had a really bad spell at home, went to brush my teeth and starting feeling really hot and sweaty. I sat down and my body starting going numb. My mouth was completely numb. And I was in a cold sweat, My heartrate went into the 160s and my parents said I was a seizure like convulsions. Crazy scary and I’m back in another hospital

Update:
Hey guys this is an update on my story, so my heart has been very high and going into svts a lot m
I’m getting these convulsion like seizures.
And a lot of muscle spasm twitching and burning. Also chest pain.
Still zero appetite and My nerves are going crazy.
My vision has been getting blurry recently as well
The doctors still don’t know the cause..
I’m getting really worried this could be deadly.

Update
In a lot of pain!! It’s hard to sleep
Went to cardio today and I’m on a 3 week monitor.
He wants me to see a electrophysiologist.
I’ve been puking the past 3 days from being in so much pain.

Hello @aeverett530,

I've read your post a couple of times and can't believe all of the symptoms you have had and still no diagnosis. How terribly frustrating not to be able to resume your life and to have all of these problems going on.

You start by saying you've had a million dollar workup but you don't mention the specific tests or specialists.

As you've been to Cleveland Clinic I'm assuming that you've had an upper endoscopy (this is where they put a camera down the esophagus and look at your esophagus as well as your stomach)?

What type of neurological testing has been done? Such things as MRI of the brain, EMG, etc.

Have you been examined by an endocrinologist? Endocinologists are experts at putting the body systems together. It is an exceptional specialty.

As you are comfortable doing so, please share more about the testing (and specialists you have examined you) so far.

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Yes so I’ve had tons of bloodwork I mean probably 100k alone, nothing really showed up except a little elevated Paraneoplastic panel and some gad antibodies.
So what’s been done
• Bloodwork and urinalysis
•CT of head to abdomen
•MRI of brain, neck, and spine
•PET Scan- some nodes in neck nothing remarkable
•EDG
•EEG
•Nasal Endoscopy
•Tilt table-tacky/ note was done 5 months in and at first my heartrate was never effected
•10 Echocardiograms
•EMG
• Sweat Test
• Lumbar Puncture- little bit of elevated lymphocytes/nothing remarkable
• i’ve had IV steroids, plasmapheresis, IV I G, ect.
• things on here have been repeated over, and some things I probably forgot.
specialist I’ve seen
-neurology
-infectious disease
-endocrinology
-Rheumatologist
– cardiology
-Tons of Hospitalists

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@aeverett530 Wow at your age you,ve been through the wringer Have you seen. a Gyn Dr You say you,ve been in Cleveland Clinic have you been to Mayo they are a great research hospital for diagnosis Closest would be in Rochester I think sounds like your near Cleveland Be your own advocate you know your own body and it is trying to tell you something is wrong so keep digging Praying for you Let us know how things are going

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@lioness

@aeverett530 Wow at your age you,ve been through the wringer Have you seen. a Gyn Dr You say you,ve been in Cleveland Clinic have you been to Mayo they are a great research hospital for diagnosis Closest would be in Rochester I think sounds like your near Cleveland Be your own advocate you know your own body and it is trying to tell you something is wrong so keep digging Praying for you Let us know how things are going

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I really have been through a lot that no one at my age should have to go through, I’ve been told this is the hardest case my neros have seen.. 2 of my doctors referred me out to Mayo but they literally will not accept me.. it’s so sad
I’m not sure what to do anymore, feel like I don’t have a voice. I’ve been trying to advocate, my dad has been my biggest advocate.

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@aeverett530

I really have been through a lot that no one at my age should have to go through, I’ve been told this is the hardest case my neros have seen.. 2 of my doctors referred me out to Mayo but they literally will not accept me.. it’s so sad
I’m not sure what to do anymore, feel like I don’t have a voice. I’ve been trying to advocate, my dad has been my biggest advocate.

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Have your Drs referred you to Mayo or was a self referral denied?

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@rwinney

Have your Drs referred you to Mayo or was a self referral denied?

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Yes My primary care doctor and my neurologist and I got two denials…

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@aeverett530

Yes My primary care doctor and my neurologist and I got two denials…

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@aeverett530 I'm sorry to hear that.

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@aeverett530 What stands out to me (and you even mentioned it) is the possibility of Lyme disease Lyme can affect the heart and nerves and cause seizures. It just depends on where it goes in the body as to which symptoms it can cause and they call it the great imitator because the symptoms mimic other diseases sending a patient down a different path. The main Lyme bacteria is a spirocheate that is spiral shaped and drills through tissues. There are a lot of co infections with it that are other bacteria or parasites. It is controversial among heath care providers as to how to cure it, but most agree that antibiotics are needed asap after a tick bite to prevent chronic infection in the first day or so. A person should also use antibiotic ointment on a tick bite immediately because that can be absorbed through the skin and call your doctor. The doctors who have made it their specialty to treat Lyme patients are in the ILADS group and they will treat it aggressively with antibiotics over months or couple years because it may take that long to treat all the co infections. Lyme can hide behind biofilms in the body untouched by antibiotics to emerge later continuing the infection, so timing of treatment is important. Unfortunately, many Lyme tests are inaccurate, and infected patients go undiagnosed, but there are specific labs that specialize in Lyme testing.

The other thing that stands out is thyroid function. Have they evaluated that completely? An over active thyroid will speed up the heart and cause anxiety type reactions in the body. If there is any mass on the thyroid that could affect it's function that would be easy to see with imaging.

Here is information that I have saved with links about Lyme that may be of help. You might not be getting enough information about it from doctors outside of ILADS. Did you have a tick or other insect bite before your illness began? If you watch the documentary "Under Our Skin" you'll see patient stories and the symptoms they have had of extreme disability from Lyme and how they recovered. Patients can also have a bite they didn't notice any many do not get the typical bull's eye rash from Lyme.

Patient story from the executive producer of “Under our Skin”
https://www.vox.com/the-highlight/2019/6/18/18677511/lyme-disease-diagnosis-health
https://www.lymedisease.org/lyme-basics/co-infections/babesia/
Here are some links that describe the challenges with testing for Lyme disease which isn't just one specific organism causing an infection, but many. The accuracy of a blood test is also affected by how long it has been since exposure to infection, and if the body has mounted an immune response against it, and how that would change over time. The Igenex test covers more bands in comparison which you can read about from the link below. The best answer to your question would be from an ILADS doctor who could explain the limitations of testing. For some of the co-infections that accompany the Lyme bacteria, there are no diagnostic tests and the doctor evaluates the patient physically in addition to testing they do. They might test to see how many specific white blood cells are responding to an infection because Lyme can destroy the white cells that are trying to protect the body by fighting it, and the test would show a reduction in the white cells.
https://www.ilads.org/research-literature/controversies-challenges/
https://iladef.org/education/lyme-disease-faq/
https://igenex.com/the-igenex-advantage/
Here is some information that might be helpful about Lyme Disease.

The Western Blot test is not very accurate and does miss diagnosing Lyme Disease. That is a costly mistake to make if Lyme Disease goes un-diagnosed for years. The doctors who are the experts at treating Lyme are in the ILADS group. The Igenex lab has more accurate tests. https://igenex.com/ Lyme destroys white blood cells that are your immune system.

Lab in Germany https://www.arminlabs.com/en

Here is a link to ILADS (International Lyme Disease Association). https://www.ilads.org/patient-care/ilads-treatment-guidelines/

Here is the Lyme treatment guideline
https://lymediseaseassociation.org/wp-content/uploads/2009/08/BurrGuide200810.pdf
There is an educational documentary call "Under Our Skin" which profiles several patients and their treatment and controversy about Lyme. https://underourskin.com/

Here is a link that discusses ILADS antibiotic recommendations and for recommended number of days, scroll until you find it.
https://www.tandfonline.com/doi/full/10.1586/14787210.2014.940900
Exercise helps because it raises the effective oxygen perfusion rates in your tissues, and oxygen can be toxic to bacterial infections. Getting your Vitamin D levels optimized helps because that increases your immune system response.

REPLY
@jenniferhunter

@aeverett530 What stands out to me (and you even mentioned it) is the possibility of Lyme disease Lyme can affect the heart and nerves and cause seizures. It just depends on where it goes in the body as to which symptoms it can cause and they call it the great imitator because the symptoms mimic other diseases sending a patient down a different path. The main Lyme bacteria is a spirocheate that is spiral shaped and drills through tissues. There are a lot of co infections with it that are other bacteria or parasites. It is controversial among heath care providers as to how to cure it, but most agree that antibiotics are needed asap after a tick bite to prevent chronic infection in the first day or so. A person should also use antibiotic ointment on a tick bite immediately because that can be absorbed through the skin and call your doctor. The doctors who have made it their specialty to treat Lyme patients are in the ILADS group and they will treat it aggressively with antibiotics over months or couple years because it may take that long to treat all the co infections. Lyme can hide behind biofilms in the body untouched by antibiotics to emerge later continuing the infection, so timing of treatment is important. Unfortunately, many Lyme tests are inaccurate, and infected patients go undiagnosed, but there are specific labs that specialize in Lyme testing.

The other thing that stands out is thyroid function. Have they evaluated that completely? An over active thyroid will speed up the heart and cause anxiety type reactions in the body. If there is any mass on the thyroid that could affect it's function that would be easy to see with imaging.

Here is information that I have saved with links about Lyme that may be of help. You might not be getting enough information about it from doctors outside of ILADS. Did you have a tick or other insect bite before your illness began? If you watch the documentary "Under Our Skin" you'll see patient stories and the symptoms they have had of extreme disability from Lyme and how they recovered. Patients can also have a bite they didn't notice any many do not get the typical bull's eye rash from Lyme.

Patient story from the executive producer of “Under our Skin”
https://www.vox.com/the-highlight/2019/6/18/18677511/lyme-disease-diagnosis-health
https://www.lymedisease.org/lyme-basics/co-infections/babesia/
Here are some links that describe the challenges with testing for Lyme disease which isn't just one specific organism causing an infection, but many. The accuracy of a blood test is also affected by how long it has been since exposure to infection, and if the body has mounted an immune response against it, and how that would change over time. The Igenex test covers more bands in comparison which you can read about from the link below. The best answer to your question would be from an ILADS doctor who could explain the limitations of testing. For some of the co-infections that accompany the Lyme bacteria, there are no diagnostic tests and the doctor evaluates the patient physically in addition to testing they do. They might test to see how many specific white blood cells are responding to an infection because Lyme can destroy the white cells that are trying to protect the body by fighting it, and the test would show a reduction in the white cells.
https://www.ilads.org/research-literature/controversies-challenges/
https://iladef.org/education/lyme-disease-faq/
https://igenex.com/the-igenex-advantage/
Here is some information that might be helpful about Lyme Disease.

The Western Blot test is not very accurate and does miss diagnosing Lyme Disease. That is a costly mistake to make if Lyme Disease goes un-diagnosed for years. The doctors who are the experts at treating Lyme are in the ILADS group. The Igenex lab has more accurate tests. https://igenex.com/ Lyme destroys white blood cells that are your immune system.

Lab in Germany https://www.arminlabs.com/en

Here is a link to ILADS (International Lyme Disease Association). https://www.ilads.org/patient-care/ilads-treatment-guidelines/

Here is the Lyme treatment guideline
https://lymediseaseassociation.org/wp-content/uploads/2009/08/BurrGuide200810.pdf
There is an educational documentary call "Under Our Skin" which profiles several patients and their treatment and controversy about Lyme. https://underourskin.com/

Here is a link that discusses ILADS antibiotic recommendations and for recommended number of days, scroll until you find it.
https://www.tandfonline.com/doi/full/10.1586/14787210.2014.940900
Exercise helps because it raises the effective oxygen perfusion rates in your tissues, and oxygen can be toxic to bacterial infections. Getting your Vitamin D levels optimized helps because that increases your immune system response.

Jump to this post

I’ve had three different Lyme tests, even a provocative one where I got a massage, voided and then sent my urine. I even talked to a LLMD. We ruled it out it’s not Lyme. As for my thyroid the levels are perfect, I do have a nodule on it but it’s very small and we monitor it with ultrasounds.

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,@aeverett530. Maybe @johnbishop can help you he has a wealth of knowledge So I'd like to ask John to give you some contacts at Mayo

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@lioness

,@aeverett530. Maybe @johnbishop can help you he has a wealth of knowledge So I'd like to ask John to give you some contacts at Mayo

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@johnbishop any help would be great !!

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Thanks for the mention @lioness. @aeverett530 I have no medical background or training but did a little searching on some of the symptoms you mention – crunching in the throat when you swallow, swollen nodes under the jaw and it sounds similar to TMJ (Temporomandibular Joint & Muscle Disorders) but I don't know if that could also cause body pain. You may have more that one thing going on. Here's a great video on TMJ: https://youtu.be/9dbFm7YhgGM. There is also a discussion where you can meet others discussing the disorder – Research on TMJ: https://connect.mayoclinic.org/discussion/research-on-tmj/

Here's an excerpt from the link below that talks about nerve pain associated with TMJ… "Can TMJ cause nerve pain? BACKGROUND AND PURPOSE: Temporomandibular joint disorders (TMJ-D) may be associated with the onset of neuropathic pain. … CONCLUSIONS: We suggest that a closer proximity between the TMJ disk and the mandibular nerve could be one of the causes of the onset of neuropathic pain in patients with TMJ-D and neuropathic pain."
Neuropathic Pain in Temporomandibular Joint Disorders: Case …: http://www.ajnr.org/content/30/7/1414

I know you have seen a lot of different specialists and doctors but if it's an option for you, I might suggest inquiring at Mayo Clinic where medical experts work in multidisciplinary teams across different specialties. If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

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@aeverett530

Yes My primary care doctor and my neurologist and I got two denials…

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Hello @aeverett530,
If you are comfortable sharing a bit more, did Mayo give you a reason for the denials, i.e., insurance coverage, couldn't help, etc.?

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@hopeful33250

Hello @aeverett530,
If you are comfortable sharing a bit more, did Mayo give you a reason for the denials, i.e., insurance coverage, couldn't help, etc.?

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Denied my case saying they don’t think they can offer anything else…

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@aeverett530

Denied my case saying they don’t think they can offer anything else…

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@aeverett530 Sorry to hear Mayo denied your case What medications are you on now,if I may ask ?

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